WHINE!  WHINE!  WHINE!

Good Morning Beautiful Ladies!
And I do mean beautiful – one of the blessings I have received on this cancer journey has been getting to know, and count as my friends, so many wonderful, talented, and inspiring women.

I know by now your head is spinning with cancer information and you probably want to get out of here to relax and enjoy the rest of the weekend and here we are wrapping up the session with the really BIG ONE – METASTASIS or the less ominous sounding term “recurrence.”  This of course, is the worst nightmare for all of us.  I would like to know if there are others in the audience who have received a metastasis diagnosis.  If so, please raise your hand.  (would you mind giving us your name and date of diagnosis?)  or (No – that is a very good thing.)

For those of you who do not know me, my name is Brenda Barnes and I am going to recount my journey for you and hopefully impart some words of wisdom and hope along the way.

I was first diagnosed with breast cancer in January of 1999.  The cancer was caught early – a lump that I felt two months after having a negative mammogram -- I had a lumpectomy, chemo (4 rounds of A/C), followed by radiation.  It was said that I had microscopic infiltration of one lymph node.  I was HER 2 positive. 

A little background information about my initial treatment protocol for I will elaborate more on it with my metastases diagnosis.  My oncologist, at the time, discussed with me the possibility of participating in a clinical trial of the drug Taxetere.  I declined because I feared the possible side effects.  However, before proceeding with my treatment I did seek a second opinion.  That oncologist recommended I follow the A/C with 4 rounds of Taxol.  Again, I did not like the possible side effects, which were near the same as Taxetere, and did not discuss that option with my oncologist.  I’ll come back to these decisions in a little bit.

However, since I was HER 2 positive I did discuss with him the possibility of having Herceptin as part of my treatment.  I was told that was not the approved protocol.  Since Herceptin was the only drug shown to be effective with HER 2 positive cancer it just seemed to me to be the intuitively logical way to go.  Fast forward to 2007 and it is now the protocol.  Several months of weekly Herceptin is given following the completion of chemo and/or radiation and with very good results.

After my treatment completion I was optimistic that all was going to be well, and entered the “after care” phase.  It was during this time that I received a piece of advice that I wish I had heeded but did not.  The advice was, “Whine, Whine, Whine.”  That is with an “h” – (spell) W H I N E.  This piece of advice came from a parent that had lost a child, who was only in her early 20s, to cancer.   Although she was getting regular aftercare checkups nothing out of the ordinary was being brought up until the child was in obvious pain, and by that time she was in serious condition and did not live much longer.  Asked why she had not said anything she responded that she did not want to be thought of as a “whiner.”

Around the spring of 2002 I begin to notice some subtle changes in how I felt.  First, my left leg and hip would occasionally hurt and on three occasions my leg just gave way and I went down – fortunately on all those occasions I was able to break my fall and no harm was done.  I did report this to the oncologist on several visits but he was not alarmed because my tumor marker tests were not indicating anything was awry.  Secondly, I work in DC and utilize the commuter bus.  In the afternoon I walk three blocks on a slight uphill grade to catch it and I started noticing that it seemed to be getting more difficult and I would get slightly out of breath but I marked this up to age and thought to myself, “this must be what people mean when they talk about aging,” and I confess I did not mention this to the oncologist.  I should have --------------- WHINED. 

In August of 2002 the oncologist referred me back to my primary care doctor regarding my complaints about my aches.  Thus started a string of diagnostic tests and trial and error prescriptions to relieve the aches.  It seems everything was being considered other than a cancer recurrence.  Finally, it was determined I had “syndrome X”, which means I am insulin resistant and do not metabolize carbohydrates and was put on a strict diet.  I lost weight – no complaints there; I looked pretty good.  In looking backward the most mystifying thing is that a simple x-ray would have revealed why my leg and hip were hurting.

Then one morning in March of 2003, almost exactly a year from my first physical complaints to the oncologist, and just as I had done in 1999, I felt a lump in my opposing breast.  Things moved very quickly.  I learned that the tumor in my left breast was not a recurrence but another primary and was also HER 2 positive.  Then came the pre-op tests.  It was then that it was discovered that I had a metastasis of the ’99 cancer.  It was spread throughout my bones and there was a small amount of fluid in my right lung.  I later was told the odds of having another primary breast cancer and at the same time a metastasis is so remote as to not be measurable – no comfort in this just a medical oddity.

One of the first things you learn about metastasis is the focus shift – it goes from life preservation to life prolonging – and surgery options are no longer on the table.  So the new primary cancer would remain in my breast which goes against what I keep calling logical intuition.  My treatment was to consist of weekly infusions of Herceptin and Navelbine.  By the third week my blood count was too low to have the Navelbine.  It also became apparent to me that with my working in DC, traveling all the way to Towson from DC every week was just not practical.  So I returned to the doctor I had seen in ’99 for a second opinion.  He is at Georgetown and just 20 minutes from my office.

On reviewing my records he was not comfortable with the way my lungs looked and ordered a breathing machine test and a bronchoscopy.  With the bronchoscopy 44 tissue samples were taken from my lungs – 22 from each.  They were all positive.  Needless to say the wind was figuratively and literally knocked out of me.  There was also a slight infiltration into the voice box.  I asked, with this additional problem, what is the best guess as to my life expectancy?  He, of course, responded about the individual characteristics of cancer and not being predictable, but in his experience about 18 mos.

His treatment approach was to be very aggressive.  Instead of Navelbine he was going to use Herceptin and Taxol weekly.  Now you recall Taxol was the drug recommended to me back in ’99 and I turned it down.  Naturally, I and my family agonized about that decision.  If I had followed that recommendation would I be in this situation?   Well about 10 minutes into the Taxol treatment we had our answer.  I was so allergic to the drug I was barely conscious and was stretched out and receiving oxygen.  Taxol was not an option for me.

The following week I started on Taxetere.  Taxetere is very similar to Taxol but has a different delivery agent.  I had seven rounds of it over 7 weeks and state up front it nearly killed me.  The toxicity of the drug lasted for several months after it was stopped.  From May to August of ’03 life was very tenuous.  I was so frail and weak that I walked with a cane and carried an oxygen tank.  I entered this treatment without any extra weight – 30 lbs. lighter than I am now (remember the syndrome X) and with Taxetere it was forced eating because everything tasted awful so I lost even more weight.  First, my right lung had to be drained – more than a liter of liquid was removed from the sac surrounding the lung.  Secondly, I had emergency room admittance because I just felt I couldn’t put one foot in front of the other.  Turns out my heart was in a fibrillation mode – fluid had gathered in the lining around the heart to such an extent the heart could not beat.  I was rushed into surgery to drain the fluid.  My son was told to prepare for the worst that I was in such cardiac distress it was unlikely I would survive.  About 6 weeks after this at a regular office visit with the pulmonary doctor he looked at me and said he was admitting me that again my system was so compromised with fluid that I could have a “sudden death” at any moment and would not be able to be revived.  Again I was rushed into surgery and this time my chest was cut open and a permanent drain put into my heart called a “cardio window.”   No one expected me to live to see the holidays.  My oncologist and I discussed stopping treatment and hospice.  My son took me to Tennessee to say goodbye to my family and friends.  However, I had two angels.  First was the pulmonary doctor who would not let me give up because he would not give up.  This young enough to be my son, good looking doctor looks me directly in the eyes and literally announces, “I’m not going to let you die.”  And secondly, a dear friend arranged a Mass for the Anointing of the Sick for me in early Sept. and invited my friends – some of you were there – and it was one of the most beautiful experiences of my life.  The feeling of love in that chapel was palpable.  From that moment I started to improve.

I still suffer from the side effects of the Taxetere.  There is neuropathy in both feet (no more high heels), neuropathy in my right hand, no reflex response, and eye problems.
The treatments I have had since have had their negative side effects but certainly have not been as dramatic.

I was on Xeloda (oral daily for 14 days, off 7) for 16 mos.
Herceptin and Navelbine for 14 mos.
And for the past 18 mos. It has been Femara and Herceptin.  Currently, it is said I am “stable” which is as good as it can get - medically.

This past spring it was confirmed that the cancer had spread to my uterus and ovaries.  Much to my surprise surgery was performed without question.  I had a total hysterectomy.  I believe the reason for this was a “quality of life” issue as opposed to a life prolonging effort.  I had begun to have occasional heaving spotting and it was probably just a matter of time until I would have been bleeding which would certainly detract from the quality of life.

Now some of the coping and life lessons I have learned from this experience:

Faith:  I will be politically incorrect and talk about God.  If one does not have a belief system in a supreme being my heart goes out to you for I don’t know how you walk this road.  It is what sustains me.

Communicate issues with family and friends:  In addition to my health issues, I am a caregiver to my husband, which means I only have my son and daughter – in – law to turn to.  The rest of my rather large family is at a great distance from me. I count on you, my friends, who are a major blessing in my life.  From the beginning of this journey I have sent out regular e-mail updates that cover the who, what, when, doings of my life.  This helps mobilize support I need from time to time.  I also, hope it makes it easier for you to communicate with me; not to be afraid you may say something that will upset me.  Our culture shuns talking about the dying process even though all of us will some day.
Live Today:  We all know this intellectually; a life threatening diagnosis helps you embrace it.  Life expectancy is unpredictable for all of us.  It is even possible I will live longer than some of you.  As crazy as it may sound metastasis is very liberating.  You stop putting things off.
Plan for the Future:  I have a list called “Places to Go – Things to Do” and it stays about the same length; as things come off I’m adding another.  I leave on Oct. 10 for Greece and I’m already thinking about the next trip, and the next, and the next.  Having that special event hanging out there in front of me keeps me moving toward it.

Anxiety: I most certainly cannot stand here and say I don’t experience anxiety.  However, I really believe the anxiety level depends on where you are across the life span.  It has got to be much easier for me than the young woman with dependant children. Many do not understand why I continue to work – the simple answer is, “it makes me feel normal.”  I can get out of that bed at 4:45, face the commute into DC, sometimes put in a 9 or 10 hour day, and face the commute home.  I feel very smug about it  --  because I’m able to do it.  Think about it – I CAN DO IT.  I thank God for that empowerment; it is how I cope.

Thank you for your time and Ladies please remember to WHINE! WHINE! WHINE!